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Anouska09
02-24-2009, 11:55 PM
So I stumbled across this site, and I like that you could ask questions and get them answered by real people who know what you are going through.
I doubt my story will be any different, but here it goes.

I have been getting sick on and off for the past 6 years now, and I am only 20. I have a wide array of symptoms that will come and go, or not leave at all, some will come back in groups, then sometimes it's just one will return.

I am so sick of doctors not believing me, or not agreeing that there might be a slight possibility that something is wrong. The biggest offender I have is severe joint pains, and it really does hurt me when people say, "Your too young to have joint problems." So I am feeling like I am going crazy.
I just want to know what this is.

I recently found a doctor who believed me (mostly), and had me get an ANA test, but when it came back neg she stopped right there and told me that it is only my fibro. But I can't help but feel that there is more to this than just fibro.
Here are as many symptoms that I can think of:
~severe joint pain, that can keep me in bed for days at a time
~rash on the top of my legs, collar bone, arms, and back (gets worse in the sun)
~insomnia (which I am taking Ambien for)
~depression (which I am taking Prozac for)
~fatigue
~restless legs
~extremely jumbled mind, it is very hard lately for me to form sentances
~weight gain/loss (depends on the flare)
~trigger points (from the fibro)
~it hurts to take in to much air (I can't run anymore, it feels like I am inhaling daggers after a while)
~ TMD grinding my teeth too much
~severe to mild headaches
~chronic eye infections (I don't remember the whole long scientific name for it)
~floaters (I'm not sure if that's related or not)

Please help me, please tell me what you think. I can't take this anymore.
Bless you all!

sick n tired
02-25-2009, 01:37 AM
Hey Clare...gentle hugs for you...

I understand the frustration...It took me 10 years of telling my doc and being treated like it was all in my head...it might have been longer than 10 years come to think of it.
Find another doctor and keep looking for one who will listen and at least take the appropriate tests. My doctor that I was using never even took some of the bloodtests for autoimmune...it was a general practitioner of my friend's who listened and tested me for everything he could think of and I ended with a high speckled ana and liver envolvement as well as others.

I do hope you find the answers, but until then this is a great place to get understanding.
Oh...I have alot of floaters, too...If you find anything out, let me know.

hugs.....

mountaindreamer
02-25-2009, 05:54 AM
hi clare,

i am soooo sorry that you are going through this difficult time. It is disheartening to see so many young people dealing with this.

I too was first diagnosed with fibromyalgia. For 13 years my dr. and I felt there was more to my situation than fms,but i did not have enough symptoms for her to be able to diagnose the lupus. My tests came back positive, but the symptoms were not there....even the mayo clinic did not diagnose the lupus. Now, 13 years later, all of the symptoms are there, and lupus is added to my diagnosis. I guess my point is, if you feel comfortable with the dr., keep working with them, fine tune your answers about symptoms, and encourage more specific testing. There are speciality labs accross the country that your bloodwork can be sent to, etc. ...there are options, and hopefully your dr. will keep probing for a diagnosis.

phyllis

Saysusie
02-25-2009, 01:31 PM
You did not mention what type of doctors you have been dealing with. From the symptoms you've listed, I would suggest that you see a rheumatologist. Many primary care doctors do not know enough about auto-immune diseases to know that the ANA test is merely a screening test. It does not determine or rule out a diagnosis of Lupus. A rheumatologist would probably have known that, if the ANA is negative and the patient is exhibiting symptoms of Lupus, other more specific tests should be run.
Those tests are:
1) b. DNA antibodies
This is the highly specific test for lupus. For some unknown reason the presence of antibodies against double-stranded DNA is the hallmark of lupus. It is very specific for this disease and rarely found in any other condition. Strongly positive anti-DNA antibody tests provide almost total proof of the diagnosis. The level or titre of the antibodies provides a rough guide to disease activity and is used by physicians to monitor the ups-and-downs of the disease. It IS possible to have negative ANA with positive DNA antibodies.
2) ENA
The term 'extractable nuclear antigens' applies to a battery of other antibodies which are found in lupus variants such as Sjogren's syndrome and mixed connective tissue disease - these will be discussed in a separate fact sheet.

3) Antiphospholipid antibodies

These tests are associated with the important problem of 'sticky blood'. Patients with high levels of antiphospholipid antibodies have an increased tendency to clotting both in the veins and arteries, and in pregnant women with these antibodies there is a risk of thrombosis of the placenta leading to miscarriage. It is now recognised that many women with recurrent miscarriages have antiphospholipid antibodies and that successful pregnancies are possible when the patient with sticky blood is treated either with aspirin or with an anticoagulant.

4) Complement

This is a term used for a group of proteins in the blood which are involved in the immune process. In active lupus, the levels of complement (usually measured as C3 and C4) are low and these often provide a clue to the degree of disease activity.

5) Also, there are other general blood tests that can be run. For example, in addition to the specific blood tests, the usually requests a full blood count and biochemistry. The blood count in lupus can show low white cells, low red cells and low platelet counts. Biochemical tests are important, especially the creatinine and urea which are raised if there has been evidence of kidney disease. Two blood tests, the ESR and the C-reactive protein (CRP) are used as barometers of disease activity.

6) Urine tests

Testing the urine is vital in lupus patients and it is the practice in some lupus clinics to teach all patients how to test their own urine. The simple test uses a 'dip-stick' to check for protein (often the earliest clue to the presence of kidney disease). More precise urine tests are performed on a MSU (mid-stream urine - a sample of urine sent to the laboratory for microscopic analysis). Under the microscope, the presence of white cells, red cells or clumps of cells (casts) is recorded to look for all possible signs of kidney disease. Finally, all urine sent to the laboratory is tested for bacterial infection.

7) There are more complicated tests that can look for more widespread organ involvement. These will include echocardiograms, brain scan (NM), kidney scans and, if there is evidence that the kidney is inflamed, possibly a kidney biopsy.

Having said this, it might be advisable for you to find a rheumatologist, insist that your symptoms are real and that they take you seriously and insist that the appropriate tests be run so that you may start treatment for your symptoms.

I wish you the best of luck and keep us advised about your search for a doctor who specializes in auto-immune disorders (eg. rheumatologist).

Peace and Blessings
Namaste
Saysusie

Peanut Butter
02-26-2009, 06:16 PM
I'm and new to this forum and actually haven't been diagnosed. It seems most people have trouble finding a doctor who recognizes something is wrong. However, my doctors have been waiting for me to develop lupus for 10 years now.
In junior high I was diagnosed with dermatomyositis, severely enough that I was predicted to die before I turned 18. Well, at 23 I'm still here--the dermatomyositis miraculously went away (God is good). But at the same time I had the butterfly rash, mouth sores, and Raynauds--and my doctor was just waiting on the positive ANA test to cinch the deal. She was so sure that I would develop lupus that she had me get the lupus lab panel done every six months for three years, and, to her great disappointment, I never had the positive ANA she was hoping for and the butterfly rash went away.
I have had perniosis and Raynaud's since then and pretty much forgot all about the possibility of lupus. This past April I started becoming increasinly fatiqued with headaches and vertigo. I am a distance runner and even competed on my college track team, but now I get dizzy after a mile and short of breath going up stairs. I do have hypothyroidism but that is controlled. I have foot pain and hip pain, which is chronic but has become worse in the past months. I've also had an increase in mouth sores. As a nurse, I was taking care of a patient with lupus and she told me that mouth sores was the first sign she had lupus. That sent alarms off in my head, which lead me to ask my current doctor to do the lupus labs. And, what do you know, my ANA is positive now. My former doctor would be so pleased to know.
I know you don't have to have all of the criteria at once for a diagnosis of lupus, but is 10 years apart reasonable for this diagnosis? I am seeing a rheumatologist in a couple weeks, so we'll see. Any thoughts on this?

Anouska09
02-26-2009, 10:08 PM
Thank you all soo much, it means a lot to know that at least someone believes/understands what's going on with me right now. This site is giving me a lot of peace of mind.

For Saysusie:
Thanks again for replying. I saw a Rhuemy when I was about 15, I was a freshman and I missed 52 days of school, because I was soo sick. He was a class A meany. From the moment I walked in, he didn't believe me. He gave my mom mean looks when she would finish sentences for me, because I was in so much pain it was very hard for me to concentrate.
So now, thanks to these forums actually, I am going to make an appointment next week. That first visit had me pretty put off to doctors in general, but now knowing people have had the same thing happen, it doesn't seem as scary. It's almost live having an invisible buddy on your side :^)

For Peanut Butter:
Thanks for posting! And huge congrats on the dermatomyositis going away!! I have no idea what that is, but it doesn't sound good.
The few things that come to mind, from the little I know about lupus it, the "flares" and "remissions" (two words that are quickly becoming regulars in my vocabulary) can be days apart or they can be years apart. And sometimes a person can be in a constant state of "flare". So maybe that's why it took so long for a positive ANA test. Again, that's what I have read.
I can also tell you, on a personal level, that it (pardon my college wording) totally sucks being in your 20's and feeling like you're 86. And wanting to go out on the town with friends, and wanting to be able to pull an all-nighter for exams and feeling like poop.


Thank you also to "mountaindreamer" and "sick n tired", your posts are very helpful and so very appreciated.


Love to all

catsisco
03-27-2009, 09:08 AM
Clare - I know the feeling and like Peanut Butter my rheumatoligist has been waiting for my ANA to turn positive again (i had one positive at 20, then all negatives since then, i am 32 now) I was disgnosed with Juvenile rheumatoid Arthritis at the age of 8 and then at 18 rediagnosed with RA. For many many years, my biggest issue was joint related as well but in my teens I kept getting what I thought at the time were random other issues. I had ovarian cysts, issues with my nervous system and other things.

It wasn't until my mother (who had been on prednisone her ENTIRE life for asthma (she is 57 now) and the prednisone kept her syptoms of lupus at bay) was disgnosed with Lupus when I was 24/25 that her Rheumatoligist suggested I be reevaluted and then came the tests, the bloodwork again, ect. Now I am diagnosed with Lupus and RA and Sjorens. But the last two tests, my ANA was negative so who knows. Personally, I call my disease rhupus, but only becuase if I don't name it I can't fight it :)

cptnblah
03-27-2009, 06:04 PM
Where at in Michigan are you? If you are in SW MIchigan...I can offer the name of a great Rheumy that will work hard to get you feeling better.

Let me know...

mountaindreamer
03-28-2009, 06:51 AM
hi peanut butter,

yes, so many of us struggled for may years before all of the necessary parts fit together and a diagnosis was made. don't really know why we would push for such a diagnosis, but we do. i guess, once we know what it is, we feel we can better treat it....but i don't know about lupus. every time i think i have a grasp on this disease, something jumps and surprises me.....oh the many visits to the dr and hospital and am always told "it must be your lupus" ugh, i hate those words.

welcome, i hope your new dr. is competent and compassionate. being a nurse, i am sure you know how to communicate with drs. the problem i often encounter is that if i am in a flare, i don't do a very good job of thinking and putting these thoughts into words that anyone can understand.....(see what i mean)

the best advice that i can give, is to take a written list in with you of symptoms (current and intermittent), and questions...this helps me stay on course.

take care, let us know how the dr. appt. goes.

Kimberlee
03-29-2009, 12:40 AM
Clare,

I can't add much more advice than the great ideas that have already been suggested, but I just wanted to add my encouragement here. I am 22 and was diagnosed at 13 - nearly the same age as when your symptoms started. I was one lucky enough to find understanding doctors right from the beginning.

I know how hard it can be, especially in college, when your brain is completely fuzzy and you can't think straight - and everyone is expecting you to write this essay or study for a different test. Just forgive your brain when it won't cooperate with you, and get some rest.

Make sure take a list of symptoms to the doctor with, including when and for how long each occurs. It will help both you and the doctor, and you won't have to worry about remembering to tell him everything.

Good luck and let us know how it goes and if you need anything else.
:cute:
Kim

ashleybaby715
03-31-2009, 04:57 AM
hi clare.
first off, i wanna say that you found the right place to talk to people! everybody on here is so welcoming and very very helpful when you have a question! its nice to be on a site where people understand exactly what your going through because theres a good chance that they are going through it too!
from what you are saying, it definetly does sound like lupus!
i am still kind of new to this whole 'lupus' thing.
i am sixteen and was diagnosed January 12th of this year.
luckily for me, i was diagnosed pretty quick, mainly because all my symptoms kinda hit me at once.
here are my symptoms-so you can compare to yours :
-EXTREME fatigue!
-loss of apetite [[which was really weird for me, because even though im like a twig, i eat soo soo much! haha]]
-joint pain
-joint swelling
-my knees were doubled in size, along with my feet/ankles, fingers and wrists
-it hurt, like just to move. if you touched me, it hurt !
-freezing all the time
-fingers and toes turned blue / white when cold. (raynauds)
-i turned extremely pale
-anemic
-protein in my urine (proteinuria)

... but now that i am on my medicines (which i will tell you if you want to know) i am doing soooo much better!!

i wish you the best!!!! and feel free to message me !

Ashley<3

Saysusie
04-01-2009, 02:21 PM
Clare;
Have you had your next appointment? How did it go? I hope that the doctor was more understanding than the first A class meanie that you ran into!
Let us know how you are!

Peace and Blessings
Namaste
Saysusie

Anouska09
04-01-2009, 06:42 PM
AGH!! Today was terrible!!

But first I would like to say thank you to everyone who posted. I would like to thank you all individually, but I'm very tired right now.

I had my rheum appointment today, and he like everyone else didn't believe me.. ugh... Even though he kept saying "I believe you, I believe you." every time after he would say that, he would add something like, "Has anyone recommended that you see a psychiatrist?" It wasn't until afterward, when he gave me a Rx for a pain killer (I think it was actually an anti-inflammatory, even though I told him that I have been given the same things and they don't work) that I saw that his colleague is the first Rheumy I saw!! .... I might have seen that one coming...

I even typed out a list of my symptoms, and said how often the occur, because I can't form sentences sometimes to remember all my symptoms. (Thank you sooo much to those that suggested that!)

I got tired of listening to the same things I have heard over and OVER again, and I asked him straight out, "Could this possibly be MS or lupus?" He instantaneously shot me down, I barely got to finish my sentence. I asked why and he said, "Because none of you symptoms match either of those, and because if your blood work didn't show anything, then there is nothing there."

Now I have 2 things to ask:

First. Is it possible to have negative ANA and still have lupus?

And second. If I told you I had; depression/anxiety, dizziness/ vertigo, skin rash, face flushing, eye pain/ chronic eye infections, cold skin, insomnia trouble concentrating/ falling down the stairs... (that's only about half I had down, but like I said, I'm really tired) Does that not sound like lupus or MS?

I feel like I am going crazy. I don't know what to do. Just because I don't walk with a cane, doesn't mean that I don't have days where I can't get out of bed because the pain is too much to bare. I don't know what to do, I feel sick and scared. And what's worse is I feel like I'm 15 again, having to start all over again.
I just want a name, something to prove to not only other people, but mostly to myself, that I'm not crazy, and I'm not just depressed. I feel deep in my soul that something else is wrong, other than the fibro, but no one will listen, because it's not on their chart.

Sorry that was soo negative, but I feel so lost, sick, and scared...

mountaindreamer
04-01-2009, 07:29 PM
hi clare,

so so so sorry to hear about your day. I have seen many drs. over the past 13 years, and never has anyone asked me about seeing a psychiatrist. sounds like you may have to change drs. again....sorry, but it is better to go through the hassle of changing drs, than it is to subject yourself to this abuse.

my search started in 1996, spent months feeling terrible and looking for a reason for the sudden collapse of my health. i was seeing "the best" rheumatologist in atlanta. ha ha they could not find out what was wrong with me, so i went to the mayo clinic, where i was diagnosed with fibromyalgia (even though my ana was positive, i had blood in my urine, i had discolored feet and hands, and extreme pain in my hands). i came home excited to have a diagnosis, and my "best in atlanta" rheumy replied with "i don't recognize fibromyalgia". i was literally left standing in his office with no direction and charts in hand.
i found a new dr. she has worked with me for 13 years, knowing all along that there was more to my illness than only fms. it was not until this past october that she diagnosed me with sle.....i just never had enough symptoms to reach the criteria for diagnosis (even though i continuously tested positive ana).

after joining this forum, i realized that i was partly to blame for the delay in diagnosis. i did not realize that the symptoms could come and go, and i thought everything was fms. therefore, i did not answer her symptoms questions accurately, and so i went 13 years with the only diagnosis being fms.

my point, this disease is often difficult to diagnose. everyone is different, and even different labs vary in their findings.

keep writing in your daily health journal, read and learn as much as you can from the information here, and try to find another dr.

we are here to help, so don't let those drs. get you down. (where are the chairs, here is another dr. that needs whacking)
:fighting0050:
aahhh, here is our little buddy. he is whacking another whack.

tasha
04-02-2009, 11:11 AM
i am 23 and a graduate student so i completely understand how f&*kin hard it can be. like having huge papers due in a week and feeling so horrible and not being able to focus on anything... which only adds to your stress levels making you feel even worse! and then not being able to go out clubbing with your friends because you feel like crap... yeah, it's all very familiar to me.

hang in there... and find a good doctor that doesn't tell you to just go see a psychiatrist! ugh, it really is hard to find good doctors it seems =(

Saysusie
04-02-2009, 01:04 PM
First, to answer your question: YES, you can have negative ANA and still have Lupus. The condition, in fact, is called "ANA-Negative Lupus". There is a small percentage of lupus patients who have negative ANA (however, doctors are finding, recently, that this percentage is steadily growing).

Many doctors do not want to subscribe to this phenomenon of patients who are ANA-negative but with many clinical features consistent with Lupus. The ANA test is used to screen for lupus, not to diagnose it or to dismiss it! Many doctors believe that ANA-negative lupus is either very rare or does not exist at all. These doctors will sometimes say that their patients have a “lupus-like” disease. Other doctors will diagnose their patients with “mixed connective tissue disease,” “undifferentiated connective tissue disease,” or “forme fruste lupus”, or “hidden lupus”. Each of these conditions have specific and separate meanings and they describe different forms of illness.

Further tests are needed to determine if you do actually have lupus. Those include tests for Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies. Have your doctors run these tests? If so, what was the results? If not, INSIST that they run them in order to help determine exactly what is causing your symptoms. The most common features of ANA-Negative Lupus are photosensitivity, dermatological (skin rashes) and rheumatological (inflammed & painful muscles and/or joints) symptoms. But in some instances, ANA-negative Lupus patients exhibit one or more of the following four traits which unequivocally diagnose SLE:
1) High titer anti-double stranded DNA antibody
2) Anti-Sm (Smith) antibody
3) Biopsy-proven kidney disease
4) Biopsy-proven skin disease

Antibody tests and symptoms go hand in hand. Antibodies alone do not diagnose the disease. If you have all four of the above referenced traits, you will, most likely, be diagnosed with SLE. If you do not have all four, than any diagnosis is presumptive. It is presumed that you have lupus, even if the ANA test comes back negative.

I know how frustrating it can be to not have a name for what is afflicting you. Many of us were so happy to get our diagnosis, even though it meant that we had a lifelong disease, we were just glad to know that we were not insane & that there was a name for what was wrong with us. So, we truly understand your frustration. Continue to be aggressive with your doctors and do not allow them to dismiss you. If they don't like what you're saying, then insist that they refer you to someone who is willing to listen, willing to believe you and willing to help you. Is there anyone who can accompany you to your appointments in order to advocate for you and/or to assist you in advocating for yourself? If not, you can take some of the answers and advice that you've received here with you to your next appointment and insist that they make some real efforts to find the cause of your symptoms and start appropriate treatment.

I hope that I've answered your question. Please let me know if you need anything further.

Peace and Blessings
Namaste
Saysusie

cptnblah
04-06-2009, 02:26 PM
Hello again...I said it earlier in this thread but it did not get an answer. So here goes again. Where in Michigan do you live? The reason is that my Rheumy has an office in Michigan City, IN. That is not far from the border. If you would be interrested...let me know and I will email you her contact info. She is very good and loved by all in NW IND. She listens and is very intelligent. Just an offer...if do not get a reply this time, I will consider it a no.

Good luck,